New sjogrens symptom?

[wsjkcj1]

been extremely tired past two days. Yesterday stayed home and rested. Today went into work and not too long after started getting burning sensation in both hands and what I thought to be a rash on my arms. Went to my primary and he said it wasn't a rash but a red lacy looking pattern on my arms from my blood vessels contracting a lot. He said it could be a virus but more likely the autoimmune. Feet are starting to burn some too. I don't remember reading about this with Sjogrens. Does anyone with primary sjogrens have this problem or is it most likely another autoimmune? My mother has this problem with her feet but she has diabetes and peripheral neuropathy.

[Hidden]

Yes I have primary Sjogren's and it was my first proper symptom although I think I have had others for decades. I was misdiagnosed with RA for five years so the neuropathy was disregarded/ ignored.

Now I've been rediagnosed with primary SS but suspect that I will need skin biopsies to establish the small fibre neuropathy - because this is the only reliable test if it is something you feel you need to treat. There are drugs they can offer you, antidepressants and anti convulsants, but they are symptom only treatments. My rheumy explained that the small fibre neuropathy of Sjogren's usually only goes so far and then it just stays at that level rather than progressing. I'm not sure about this myself - mine is everywhere now.

[wsjkcj1 in reply to Hidden]

Thank you for your advice. I'll ask my Rhemy is this is a possibility for me. Does the neuropathy cause you to feel foggy headed or just burning on your skin?

[Hidden in reply to wsjkcj1]

It makes me a bit disoriented and dizzy - but I've had it for a long time now.

[wsjkcj1 in reply to Hidden]

thank you.

[weathervane]

Hi wsjkcj1

I have similar symtoms, my hands and feet feel as if they are burning and itchy particularly at night. I dont get the rash but i have also developed some symptoms of raynauds. I have primary sjogrens so i do thinks its all due to this condition. I hope it settles down quickly so you😀

[EOLHPC in reply to weathervane]

My sjogrens has been secondary, but lately seems more active than my infant onset SLE. My burning is mainly due to erythromelalgia simultaneous with raynauds in a daily flaring cycle 24/7 all year round. My hands, feet, lower legs & head are worst affected. My understanding is that simultaneous EM & RP occur in primary SS too. Here is the best info I've found on this (do read he whole article: simultaneous RP & EM is covered):

rarediseases.org/rare-disea...

🍀🍀🍀🍀 coco

[Hidden in reply to EOLHPC]

Hi BC. As you may recall I looked into EM when a rheumy professor and a neurophysiotherpist both suggested it to me and my previous neuro.

The reason I finally discounted EM for myself was because my skin doesn't redden at all during attacks. However it did when I was on Nifedipine so I know the difference between Erythromelalgia (EM) and Small Fibre Neuropathy (SFN) and it was subtle in terms of sensation but very marked by the swelling and redness of the skin with EM .

Also there are actually very effective treatments to slow down the progress of SFN such as IViG and DMARDs, where there really is no treatment for Erythomelalgia apart from Asprin, possibly.

I also know that small fibre neuropathy progresses as the tiny nerve fibres die - and this makes the damage irreversible for many sufferers - so it's important that it's correctly diagnosed and differentiated from EM - which as far as I'm aware - is not thought to cause actual damage to the skin or peripheral nerves.

[EOLHPC in reply to Hidden]

I'm with you...I've been researching both my version of EM & SFN for nearly 6 years now. The True Detective medics who really give me the 😍S still tend to be relatively cautious about EM especially, eg at Yale that wonderful bunch of dedicated EM researchers are only just beginning to really feel they're understanding what's involved. So my hope is that before I go to the happy hunting grounds, I'll/we'll see these + hopefully other of the "known unknowns" in my collection of diagnoses better understood 😉💃💃💃

[Hidden in reply to EOLHPC]

Yes this is what I've read and learned so far:

SFN is much more of a common problem than EM and is not a condition in itself. I believe there's much overlap with this and PoTS and APS.

SFN is mostly associated with Diabetes, Alcoholosm, MS and Sjogren's. It can also be part of an immune mediated inflammatory neuropathy.

Sometimes doctors can't track it at all and it can then be regarded as idiopathic -in these cases it often gets associated with Fibromyalgia for some - and has been confirmed by skin biopsy.

But those with an established rheumatic disease - SFN may well be able to attributed to primary or secondary Sjogren's.

EM can be part of a rheumatic disease too I think - particularly RA and Lupus. But it is most often a stand alone disease. And real EM is invariably reflected in red hot, swollen skin as part of a vasodilatory response I think. So it can go with Raynaud's. And EM is very rare.

[EOLHPC in reply to Hidden]

Well said 👏👏👏👏. And the rarity of so many conditions like EM has turned eventually out to be a wait 'n see thing: as dedicated researchers like those at Yale discover more about the rare condition currently labelled EM & conditions like CRPS (which I also am diagnosed with) a lot will become clearer & more convincing. Meanwhile great CRPS + EM experts like the Bristol prof ortho surgeon who diagnosed & treated me are helping complex patients like us to cope as best we can considering the limitations of current knowledge...🍀🍀🍀😘😘😘😘

[Hidden in reply to EOLHPC]

Yes this is very much how I feel about my neuro form of Sjogren's too. I know I've posted it here before but I hope it might be useful to others reading this post.

hopkinssjogrens.org/disease...

[EOLHPC in reply to Hidden]

👍👍👍👍😍

[weathervane in reply to EOLHPC]

Hi coco

Very interesting article, im not sure if I suffer from EM as no redness. I am shocked everytime i read a post as to the multitude of probelms that can develop with an auto immune disease.

[wsjkcj1 in reply to EOLHPC]

Hi Barnclown,

is it the Erythromelalgia or Raynauds that makes your skin burn? Is the burning in your forehead also? thank you for the article. I have a hard time finding the exact symptoms I have.

[EOLHPC in reply to wsjkcj1]

Both: I have simultaneous EM & RP...

NB both EM & RP are slightly different for each individual...and then there are all our other overlapping conditions influencing symtomatology generally 😏

[wsjkcj1 in reply to EOLHPC]

I don't have much redness now. The Dr I saw yesterday said it was Paresthesia in my arm and that the red spots I thought were a rash were my blood vessels. Those are not red any longer but I keep getting the burning sensation in my left hand first and second finger and my forehead. I keep getting waves of fatigue and cloudy headed for several minutes, then it eases off. Kinda reminds me of when I was first diagnosed my thyroid was hyper and I felt really horrible. My thyroid returned to normal and as far as I know I haven't had any problems with it. Do you experience that with Sjogren's?

[Hidden in reply to wsjkcj1]

Yes I used to get this when I was on nifedipine - but also this can sometimes be a sign of Vasculitis, which often manifests in the skin.

[wsjkcj1 in reply to Hidden]

Oh my gosh! There are so many possibilities it hurts the brain. Thanks for your help.

[Hidden in reply to wsjkcj1]

Ha ha yes I know - my brain is in a pernanent state of sparklers with light bulbs going on and off constantly!💡🎉🚀🎳👾💥

[Hidden in reply to wsjkcj1]

Ps According to my endocrinologist, most people with primary Sjogren's also have hypothyroidism or sometimes Graves. I'm hypothyroid.

[wsjkcj1 in reply to Hidden]

Are you able to manage that with medication?

[Hidden in reply to wsjkcj1]

Yes - varying doses of Levothyroxine do the job okay I think.

[EOLHPC in reply to wsjkcj1]

Exactly! Keep a log of your observations...this is key to diagnosis. There are lots of reasons for burning symptoms & sensations....a really good diagnostician should be capable of winkling out convincing diagnoses with your help...am wishing you all the best...and hoping you'll keep us posted 🍀🍀🍀🍀 coco

[wsjkcj1 in reply to weathervane]

Hi Weathervane,

thanks for your reply. I was pretty sure this new problem is from Sjogren's but it helps to hear it from people who have actually experienced it. I'm hoping to see my Rheumy soon.